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Thread: Surgery with Dr. Lenke

  1. #1
    Join Date
    Jul 2011
    Posts
    535

    Surgery with Dr. Lenke

    Hi Everyone,

    We are staying in a cute bed and breakfast in St. Charles; however, the internet here is horrible. Unable to send emails today, but here are my updates.

    Mission accomplished! Met with Dr. Lenke yesterday and he said he can help me and the earliest surgery date available was Aug 1. I'm on the cancellation list and feel good that the surgery date will be bumped up. I was able to meet with Heidi and Nancy from this forum who just so happened to have morning appointments with Dr. Lenke for their 1 year follow ups. Heidi & Nancy, thank you so much for spending time with me, it really helped pass the time and it was very comforting talking with you. Total time in Lenke's office 5 hours! I was told to expect 3 hour wait time when I scheduled my appointment last month.

    Dr. Lenke said that I am very lucky my curves were right at his cut-off (70 degrees for new patients) otherwise, he would have referred me to someone else. It is interesting to see his recommendations compared to the Atlanta surgeon who canceled my surgery because of poor bone density (lumbar T score -2.4, thigh scores normal). Dr. Lenke was very pleased that I am on Forteo and said that even though I just started Forteo 3 weeks ago, that will not impact my wait time for surgery. He said if my date moves up, his will still operate regardless of how long I'm on Forteo. The Atlanta surgeon said to call her in 6 months after starting Forteo and she'll see where I am (obviously there is no need to make this phone call). Atlanta surgeon measured me at T72* and L58*, Lenke measured me at T70* and L68*.

    Lenke gave me a choice of surgeries: Option #1 T4 - L4 and have to come back for additional surgery to replace L5 within 2, 5 or 10 years. Option #2 T4 - sacrum and no need for future surgery. My response, "To the sacrum will be great... I don't want to have to come back, no offense." Dr. Lenke and his team all chuckled at that. Lenke explained most patients opt for the sacrum.

    He will do T4 - sacrum fusion, TLIF (Transforaminal Lumbar Interbody Fusion - an anterior surgery from a posterior approach so no need for a second anterior surgery as the Atlanta surgeon recommended), about 5 to 8 Smith-Peterson osteotomies, and 2 cages at L5 with BMP (bone morphogentic protein to build a stronger fusion). He estimates the surgery to last 6 - 8 hours (the Atlanta surgeon suggested 8 - 10 hours for her posterior surgery and a 4 - 5 anterior surgery 3 months later). On Lenke's scale of challenging surgeries 1 - 10, he ranked me at 1.5 (1 being the least challenging, 10 being the most challenging). The Atlanta surgeon told me she ranked me as a 6 on her scale. The Atlanta surgeon turned out to be a bit more conservative for my needs and there is nothing wrong with that because it has ultimately led me to Lenke's care.

    I am VERY relieved that I have a plan in place with Lenke.

    Warmly,
    Doreen
    Last edited by Doreen1; 09-22-2011 at 05:14 PM.
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  2. #2
    Join Date
    May 2009
    Posts
    3,745
    that's great, Doreen
    so happy for you that it will work out with Dr Lenke!

    you mean August 1, 2012?
    will you stay on the Forteo til then?

    jess

  3. #3
    Join Date
    Jul 2011
    Posts
    535
    Hi Jess,

    Yes, 8-1-2012, Lenke is a popular guy! I am on a 2-year cycle of Forteo.

    I forgot to mention my Forteo experience at the Atlanta airport security check. I explained to a TSA agent I needed Forteo hand-checked (it cannot go through x-ray machines). While I'm waiting for the "hand check" agent to appear, another agent keeps telling me, "... just put your stuff in the cart and slide it through..." I explained to him why I couldn't and really didn't want everyone around me to have to hear what I needed to do with my special case. This guy insists I run it through the machine. At this point, my hubby and daughter are already through to the other side and are waiting for me. The special "hand-check" agent finally shows up, I explained what was in the case, please don't put it through the machine and he decides to be a funny guy and raise his voice making a bit of a scene. I was freaked out at this point and just wanted to be on my way. By the time he hands me the case back, he continues with a comment about, "... don't you trust your government employees to go a good job, blah blah." I get the Forteo case and turn to repack it into my purse and I am so upset I start crying. Poor hubby and daughter didn't know what was going on. I'm praying tomorrow morning experience at the airport goes more smoothly.

    I also forgot to say that Dr. Lenke expects to get a 70% - 75% correction! I simply cannot fathom that. I will be over the moon when it happens.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  4. #4
    Join Date
    Apr 2011
    Location
    Northern Virginia
    Posts
    213

    Congratulations!

    Glad you finally met up with Dr. Lenke and the surgery is looking like a go!

    Glad you decided to go with the one surgery...although Mercy Hospital was great, I'd like to keep surgery experiences to a minimum.

    Congratulations again!

    Dollie
    Discovered scoliosis when 15 years old.
    Wore Milwaulkee Brace for 1.5 years.
    Top curve 85 degrees, bottom curve 60 degrees

    Surgery completed August 23, 2011 (during an earthquake, can you believe that?)
    Dr. Charles Edwards, II
    The Spine Center at Mercy Hospital in Baltimore, MD
    Before and after xrays:
    http://www.valley-designs.com/myspine

  5. #5
    Join Date
    Feb 2011
    Location
    Lilburn, GA
    Posts
    201
    Doreen this is such great news!! I am so glad everything has worked out for you. We need to meet for lunch soon here in Atlanta.
    Your airport experience sounds horrendous! What a bunch of jerks. Hope your return goes better.
    Take care and have a great trip back.

  6. #6
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Glad that you have a surgeon now as well as a surgical date.Hope you will stay on the forum until you have surgery

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  7. #7
    Join Date
    Aug 2010
    Location
    Florida
    Posts
    225
    Doreen, this is exactly why you need to go to a top guy, even if it's out of town. Your experience with the different answers from Lenke and your local surgeon are almost line for line like what I experienced in my consult with Dr. O'Brien after getting my initial information from my local spine surgeon. You are now in a whole different world of expertise, and exactly where you need to be. Great news!
    Stephanie, age 56
    Diagnosed age 8
    Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
    Thoracolumbar curve 39 degrees at age 17
    Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
    Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
    Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
    Foramenotomies L3 through S1 in August 2014

  8. #8
    Join Date
    Oct 2009
    Location
    Chelsea, MI
    Posts
    53
    congrats, Doreen!!! We are SOOO happy for you! Hopefully the wait time will go quickly, and not too painfully. Hopefully, they will call you w/ a cancellation and you can go sooner. Tricky when you have to travel, but you are super motivated!
    It was fun to meet your husband and daughter. We'll be in touch, and we are here for you when you have questions.
    Hugs,
    Nancy
    Age 58
    Surgery w/ Dr Lenke August 23, 2010
    original curves 91 thoracic, 86 lumbar
    fused T1 to sacrum, new curves 50 and 45

  9. #9
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Doreen--
    I am so relieved and happy for you. You are now in the best hands possible. I hope your time goes fast and that you can get a cancellation earlier. This is great. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  10. #10
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,547
    Doreen

    Great news! Nice that you have been spared the anterior.

    Be prepared for that call. I believe Rita ended up on the wait list and was called in much sooner....Cancellations do happen. She was one who was in MAJOR pain with huge curves, I believe they were in the 90ís, to no pain after surgery. Dr Lenke must have parameters based on curve type, and spine status.

    It was probably a good thing that you started posting here and finally took the steps to finding the right surgeon. As one who was almost out of time myself, and having met rejected scoli patients,(Osteoperosis) Iím very happy for you.

    There are many of us who waited who are in the same position, that need to address their spines with a scoliosis surgeon. Waiting or doing nothing about it, can lead to heartbreak and future pain.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  11. #11
    Join Date
    May 2009
    Posts
    3,745
    what kind of a "machine" is it...if i may ask...
    i am ignorant of what the medication comes in...
    i used to get IV antibiotics for Lyme, and they were in a round infusion container
    that was hooked up to my IV line....
    but it sounds like Forteo is very different....
    ?????

    jess

  12. #12
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Doreen i'm so happy you got a surgery date with Dr Lenke. those are some major curves.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  13. #13
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Wonderful news Doreen!!

    My son never did get that appointment with our 'local' pediatric surgeon so while we were waiting I got online here and it was suggested that I contact Shriners so I did, and we ended up travelling out of the country and down two states and at first I was so overwhelmed with the whole idea but it all worked out so well that I am SO GLAD now that we did it and everything worked out way better than I thought and I will continue to travel to see this surgeon in Portland and I cringe at the thought of what would have been if we actually got that appointment here in BC b/c the care my son needed was way beyond their scope I truly believe. Life is so funny sometimes.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  14. #14
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Doreen,
    I am so happy for you. I used my wait time for "training" (not that I didn't worry, too). I always liked to exercise, but having a surgery date gave me more incentive. If pain limits you, maybe you can find a water aerobics class. Your surgery sounds exactly like what I had-T4-sacrum, 2 cages, & the reach around approach to get to the anterior side of the spine. I believe that Dr. Lenke is teaching that method to other surgeons.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  15. #15
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    What a relief! You've been through a lot and were overdue for some good news. I am so glad you are finally on the right track and in the care of one of the great ones. We are talking about the rest of your life, here! And I would sure feel better with a doc who feels that the surgery is only a 1.5 for him, rather than with a surgeon who considers it difficult. Congrats!
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

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